Hello, Just posting to share that Lilly has some sort of an infection and has been hospitalized for 1 week+ and counting. I did some reading through the archives and it sounds like our experience is pretty similary to many here with regards to mystery fevers, needle pokes, difficult blood draws, and a quest to find the right antibiotic (hoping to find one that cvan be taken by mouth soon!) to combat this infection, which more and more we are suspecting is on her hardware. If any aof you BTDT folks have additional wisdom to share, I welcome it. Have you ever been discharged on an oral ABX that was effective against (what looks tobe a non MRSA staphoreous)? Do you have any suggestions on ways to make a long hospital stay more tolerable and fun when everyone just wants to get home?? Trying so hard to keep my own spirits up so I can support Lilly,but feeling like I am failing miserably.

Oh how I wish that you and Amy weren't going thru this. Emily was in the hospital for 3 weeks last summer with a nasty infection. We took advantage of the Child Life department to help keep her busy during the hospital stay. Activities, crafts, coloring pages, word finds, movies, etc. all seemed to help the days seem less long. Hang in there - the dr. will find the right antibiotic and you will be on your way home soon!

So sorry you are dealing with infection. Collin also got an infection after his initial implant. His was also a non-MRSA staph. We tried oral antibiotics first, but it didn't work. We ended up having surgery to wash out the infected area and then they sent him home with a picc line. He felt sooooo much better after he got the picc line put in. We had to deal with the picc line for about 6 weeks, but he adapted to it very well. He carried the pump to pre-school in a little back pack on his back, and we even went on vacation with it, (home health taught us how to change the dressing). After they removed the picc line he was put on a low dose of oral antibiotic for almost a year (cefadroxil). He has been off the oral antibiotic for about 5 months now and he is doing great! Just wanted to share our experience with you. I hope they get the infection under control soon. Sending our best wishes to Lilly and your family.

My son Bradley has the same thing but it is MRSA:( We were in the hospital for 6 days. I know exactly how you feel:( So frustrating and very difficult!!! Bradley just got his picc line out, it was in for 4 weeks. And now he is on oral antibiotics. It showed up on one of his inscisions. He had to go back into surgery two times to clean it out and try and get off his hardware. They placed a wound vac on and healing very nice. Will have that for another 3 weeks at least. Your in my prayers!!! I hope Lilly is better and you guys are home:) Hang in there!!